Advice on blood test results?!

Hello Gemma,

Nice to hear you've been given some good news...I'm sure after 3 RAI's you're pretty fed up.

Some others on here may have a better understanding of the blood results than me but this is how I understand it....

The pituitary gland releases TSH when T4 levels are low and vice versa. TSH promotes thyroid cell/thyroid cancer cell growth so they try to keep our TSH as low as possible by keeping our T4 high (thyroxine meds). I think typically they like the TSH to be 0.1 or less when actively treating cancer so usually have the T4 at the higher end of the normal range, approx 25. When it goes higher than that, you go into the hyperthyroid range and the symptoms of that become more prevalent. 

The thyroglobulin test is a cancer marker for proteins created by thyroid cells. As we have no thyroid, having a higher thyroglobulin result can be an indicator of cancer presence. Less than 1 is typically a good result.

Thyroglobulin antibodies (TgAb) are also proteins that can be measured in your blood. Thyroglobulin antibodies are made by your immune system. They are often used by your immune system to find and fight foreign proteins (proteins not normally found in your body).
Most of the time, a healthy immune system would not make a lot of
antibodies to fight thyroglobulin, since thyroglobulin is not a foreign protein. But, some patients with thyroid cancer will make thyroglobulin antibodies. This can interfere with thyroglobulin tests and cause a false (often low) thyroglobulin level in your blood.

So the elevated TgAb may mean the Tg result is unreliable. I think the trend in thyroglobulin antibodies over time can be used to know how well your treatment is working.

If you have any doubts or worries, I'd reccomend going to see your ENT oncology nurse specialist. Hopefully I've given you the correct information.

Take care,

Mark

Thanks Mark, that’s really helpful! It’s fiendishly complicated isn’t it. I queried the results with my CNS and consultant who said not to worry about the antibody reading and that there’s not change my dose to lower my TSH below 1... which seems strange as I’m only 8 months post final treatment but they are the experts!

hope you’re doing ok too

Gemma 

Heya, 

Mark, almost a perfect explanation that only went slightly awry at the end. 

TGAb aren't used to see how your treatment is doing, nor to measure recurrence. They have to measure the antibodies when they do our bloods, to make sure the TG result they've got is accurate. If the AB measurement is too high, we're talking much higher than yours is, then they need to do a further test where they basically spin the AB out then re-measure the TG for a more accurate result.

What the AB can be used for isn't to do with thyroid cancer, but thyroid disease. So we're talking hashimotos and other autoimmune disorders. So if you've been diagnosed with one of those conditions, you're more likely to have high levels of AB in your blood. But even without an autoimmune disorder, they naturally fluctuate. 6 months ago mine were at 13 something. Last blood test they were at 0.something. So def nothing to worry about. 

As for your TSH, they'll probably be looking at your test from 6 months ago and they can see that your dose had you under 1. So they'll probably be thinking that this is also a fluctuation. Myself, I'm wondering if there's been a dodgy batch of levo produced, as I'm aware of a lot of people - myself included - who's TSH has jumped in the last few months. So the doctors will be expecting it to naturally decrease again by the next blood test.

Just to check however.... You've not changed your routine? Have you put on any weight? Have you started taking any new medications? Have you started taking any new supplements? If everything is still as it was 6 months ago in regards to these questions, I'd put it down to a fluctuation for now and see what happens next blood test. That's what I'm doing myself. 

Hope that helps! 

Lass

Xx

Hey Lass,

I was hoping you might stop by, how are you??

Thanks for the reassurance re the antibodies. The T4/TSH has really puzzled me - I’ve been on the same dose for 6 months and T4 has gone from 22.5 in Feb to 20.9 in May to 18.8 last week... and TSH from 0.15, to 0.44 to 2.45. I really hope as you say it’s a random fluctuation (and actually I think I did get a different batch/brand  of the genetic thyroxine a couple months ago) I’d feel happier seeing a slightly lower TSH but I think as we are planning to try for a baby my consultant is wary of changing anything and oversuppressing me again.

My weight is exactly the same, I did start taking folic acid a month or so ago but I can’t find anything to suggest an interaction. I take that plus vit D and sertraline about an hour after the thyroxine, which I’ve always done. I think possibly I’ve been a bit lax on the whole waiting 30 mins after the thyroxine before having food/caffeine (have not been sleeping well and you know those days you’re desperate for a cuppa upon waking?!) So for now I think I’m going to extend the gap between Levo and breakfast to an hour and stick to it, and ask for a repeat blood test in about 6 weeks.

Gem x

Heya Gem, 

Been having a bit of a nightmare with my own health recently, then stressing over an outfit to wear next month to my brothers wedding. Not just stressing, but getting depressed. I'm so fat and bloated at the moment, that there isn't a thing I've tried on that looks any good on me. So with everything, my head has been a bit minced, which is why I'm behind in my replies here. And as the cherry on top? Something in my back 'unravelled' on Thursday while I was sitting watching TV. So been in extra pain since then. Sorry, rant over! Lol

Can't say I know the craving for a cuppa... Lol. I'm one of those weird ones who don't drink tea or coffee. Not for any moral or ethical reason, just not a fan.

Thyroxine is stupidly sensitive and finicky. So there may not be a reason for the fluctuation, it may be that you've taken longer to process it so the food has hit it and combined with it, who knows. 

I don't remember your diagnosis, but if 8 months later your consultant is OK with you up at 2 ish then they can't be too worried, and your lump mustn't have given them any cause for concern to keep you supers up pressed, unlike me. I'm supposed to be under 0.5 and my last test had me up at 2. But as you say as well, if you're trying for a baby then a bit more of a normal level isn't a bad thing. (Good luck with that BTW!)

I'd leave it the 8 weeks and then get a blood test, rather than the 6. Just to make sure things have balanced out after your routine change. My oncologist has me waiting 3 months then testing again to see what's going on.

Fingers crossed it all sorts itself out for you! 

Lass

Xx

Hey Lass 

Apols for delayed reply - and sorry to hear you’re not feeling great, feeling bloated when you’ve got an event like a wedding is the absolute worst. I hope you manage to find something to wear that gives you a bit of a boost soon. 

Good advice revrepeat blood tests. I will wait 8 weeks. I actually went to my GP today and amongst other things (heel pain) I asked if I could be kept on the same brand of thyroxine to help minimise any fluctuations. She basically said all the generic thyroxine brands are identical (but I have read that ppl actually can process some formulations better than others) and then said actually what I need to do is lose weight ... and made me download a calorie counting app. I was furious! (She didn’t even weigh me and my weight is stable). 

Anyway, rant over - I shall be strict about not eating too close to my dose and see how things look in November. 

Take care of yourself xx

You're alright! 

I'm not so worried about the bloat at the minute. The back has overtaken it on the worry front. Doctor thinks there's a possibility that one of my mets has cracked a vertebrae. Soooo.... Yeh. Lol. Should know by this time next week hopefully.

The active ingredient in all brands of thyroxine, generic or branded, is the same. It's the fillers that differ. I've also heard some people say that they feel better on x than they do on y, but I don't understand how when the amount of filler in each tablet is miniscule. Without any evidence, my money is it being psychosomatic in that they expect to feel better on it because of something they read or were told, so do. 

And don't get me started on bloody doctors preaching about weightloss!! The number of print outs I've been given with that plate on it showing you how much of each food group you should eat per meal... I think it's at least 1 whole tree been used just to give me those things! Then there's my other favourite.... The table with three columns. The first is foods to eat lots of. Second is foods to eat in moderation. Third is foods to avoid. I swear I saw that and learnt it at school when I was in single digits!

Doctors take one look at me, without reading my full file on all my issues and medications, and just make a snap judgement in that I eat too much and of the wrong thing. One doctor, after turning up for the appointment hobbling on my stick and clearly having issues, told me that I needed to get out and walk for at least 30 mins a day to help lose weight. I just looked at her, looked at my crutch, then looked back at her, until she got uncomfortable. I also have PCOS which is well known for weight gain, and I'm on at least two medications that cause weight gain too.

Next time one of them tells you to lose weight, challenge them on it. Ask them why, then ask them how. And if they give you a load of bollocks, challenge that too. Don't let them get away with it. Tears are often quite effective too. 

Lass

Xx